30 Days of PH: My Sister, Katy, Lives in My Heart, and the Stars

Emily, right, with her sister, Katy. (Photo courtesy of Emily Doak)

Day 11 of 30

This is Emily Doak‘s story:

Katy Doak, my sister, was diagnosed with pulmonary hypertension (PH) at age 4. After years on IV treatment, she received a double-lung transplant when she was 14.

Shortly after, Katy was diagnosed with post-transplant lymphoproliferative disorder, which led to stage 4 non-Hodgkin lymphoma. She survived that, but was diagnosed with acute myeloid leukemia two years later. After 14 months of chemotherapy, Katy received a stem cell transplant. She died from complications in December 2017. She was 18.

I was 4 months old when Katy was diagnosed with PH. I never knew her when she wasn’t sick. My childhood was full of hospital visits and going out of state for her treatment. I always wished my family were “normal.”

As I grew older and she got sicker, I began to understand the weight of her illness. Every year on my birthday, I’d wish for Katy to be healthy and to live a long life by my side. In my heart, I always knew my time with her was limited.

I was 14 when I watched my sister die. When my mom told me to leave the hospital room because she didn’t want me to witness it, I refused. I don’t regret my decision. However, it’s by far the hardest thing I’ve ever gone through.

One of the hardest parts of my grief was survivor’s guilt. I believed it should’ve been me who died. It’s five years later, and I still struggle with the guilt of living a healthy, fulfilled life while my sister died young.

Milestones are especially hard. I graduated high school while my sister never got the chance. I went off to college, something Katy always wanted to do. Last year, I surpassed the age Katy was when she died. I turned 19, something I’d been dreading since her death.

I’ve learned to live without her, something that took me a long time to accept. I know now that her circumstances were out of my control. I’ll never stop grieving Katy, nor will I ever stop missing her. There’ll never be a day that goes by when I won’t think of her. She’s been a huge role model to me and still is.

Anyone who knew Katy knew that she was a fighter, even at the end. She’ll live forever in our hearts, and in the stars.

Pulmonary Hypertension News’ 30 Days of PH campaign will publish one story per day for PH Awareness Month in November. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPH, or read the full series.